Study on People Living with Diabetes and Kidney Disease

In an email from Laura Greer on January 16, I received information about this study. I took the survey, but did not qualify. I think this study may be of interest to some of my readers and they can take the survey here - http://surveys.thehennegroup.com/survey/intweb.dll/project/cawi/1416_DKD_CAWI

They have the phone number in the survey and I will give it to you - 415-348-2986 or 877.737.5782 x 286. Call this number if you have questions.

Time is limited and they will start conducting interviews in different cities in late January. They say that participants will receive $90 cash and a $10 Starbucks coupon for participating in the interviews.

NOTE: You must be accepted in the survey and have an interview to receive the money.

I do appreciate the notice that, “No attempt will be made to sell anything or influence their thinking, and all participation is confidential.”

If you know someone that may be interested, have them may call the above telephone numbers.

You may wish to contact them by phone before the survey as I completed the survey and may have answered one question incorrectly. I do have stage 2 kidney disease and did not have a question that allowed for that. I do not have chronic kidney disease or diabetes kidney disease and this probably eliminated my chances.

The website for the Henne Group is - http://thehennegroup.com/

Consumer-Driven Healthcare Is an Uncomfortable Concept

This comes from this link and is a past topic from September 17, 2012. I felt it was time to bring it up again. I have written about doctors that feel they are all the patient needs and there are too many of these still practicing. These doctors will not accept consumer-driven healthcare. Some of these doctors have set the parameters when they tell patients not to come back if they are using the internet to look up information on their disease or illness.

If you have one of these doctors, be prepared to find another doctor. In the past, they were in the majority, but this is changing. Until recently, all the data, information, and knowledge were in the domain of doctors and healthcare professionals, and the consumer, patient, and individual was out there without that information, and not even their own data. But that's changing very quickly and often for the best.

Much of the information is from a book titled “The Creative Destruction of Medicine,” by Eric J. Topol, MD. The article by the same author is on Medscape dot Com and is very interesting.

Patients will, in the future, have the capability of accessing notes from an office visit and hospital records, as well as laboratory data and DNA sequencing, and on one's smartphone, for example, blood pressure and glucose and all the key physiologic metrics.

When each patient has access to all this critical data, there will be a real shakeup to the old way that medicine was practiced. In the past, the Internet was supposed to be empowering for consumers, but that really didn't matter because what the consumer could get through the Internet was data about a population. Now, one can get data about oneself, and, of course, a center hub for all that data sharing will be the smartphone.

But in the future, with each patient potentially armed with so much data and information, the role of the doctor will be a very different one. It will be to provide guidance, wisdom, knowledge, and judgment and, of course, the critical aspects of compassion, empathy, and communication. That is a whole different look for the consumer-driven healthcare world of the future.

When Dr. Topol talks about communication, he is not talking about patient engagement, but real honest communication between the doctor and patient which helps both and does not muddy the communication. Few doctors are willing to do this and always attempt to divert the conversation to what they want to say. They are looking for patients that will aimlessly follow what the doctor orders.

As people with diabetes, we do not want these doctors. They do not live with us and if they will not provide the data we need, we can find another doctor that is more encouraging and communicates with us. Since we only see most doctors for about 15 minutes per quarter or about an hour per year out of 8736 hours per year, most of us find that the more information the doctor will provide us, the better we can manage our diabetes.

Learning to Manage Diabetes by Yourself

If it were not for doctors and that fact that we need them for prescriptions, many of us with type 2 diabetes could do well without them. Considering that many with type 2 diabetes only see their doctor twice a year or for about half an hour, and all they do then is check your A1c to see how you are managing your diabetes. Often they do not have certified diabetes educators or registered dietitians to refer you to, which may be to your benefit.

Why would I say something like this? Read my blog here from June 25, 2012 for some of my reasoning. Granted doctors vary in how often they see patients with diabetes. For well managed diabetes, they will only see the patient two times per year. For people not managing their diabetes, they are most often seen four times per year. Most patients using insulin, if the doctor even sees them, (most are sent to other specialists) want to see patients four times per year or more often. It is more often for patients with well managed diabetes and the doctors are very concerned about hypoglycemia. When this happens, these doctors obtain a program to download the meter and they do look at the readings or they have one of the office staff to this and red circle anything below 75 mg/dl.

I feel fortunate that the person I see at the VA feels very much like I do. While she is concerned about hypoglycemia, she does not view my heart problems, cholesterol problems, and blood pressure problems as something that cannot be managed and is very satisfied with the test results. She also thinks for my abilities I should be below 6.5% for an A1c and encourages me to stay there, until such time as my tests indicate otherwise or I have cognitive problems.

Diabetes self-management is important for people with diabetes. We are covering this in our support group meetings and I may cover some of it here after some of the meetings if there is more information I want my readers have. The other important part of this is Self-monitoring of Blood Glucose (SMBG). For more on this, please read my blog from May 25, 2011.

I had several emails saying the study did not accomplish anything and that once the study ended, glycemic management stopped and glycemic management waned. This can happen because participants are no longer supplied with testing supplies and often cannot afford the extra supplies on their own. Yet people want it known that these people do not need the extra testing supplies. They want people to be managing their diabetes in the blind without the added information testing can help them. More doctors are at least giving new patients the chance by requesting the insurance companies to reimburse for extra testing supplies during the first four to six months. A few doctors are helping patients every other year, but these are not as many.

The biggest problem with testing is that many patients believe they are testing for their doctor. It is hard to convince them that they can learn from their testing and use the information to help them manage their diabetes. I have talked to a couple of doctors about this since I knew the doctor that the person was seeing. Then I am told by the patient that whom they test for was none of my business and of course, I tell them that if they want to lie to me, I don't care, but to lie to their doctor is not a good practice.

Diabetes, Why Isn't Medicine Doing What It Should?

This was published in the British Journal of Diabetes and Vascular Disease. Some of you might like to read the article. In reading this, I have to wonder why the doctors in the United States cannot do anything right. For this, I think some of the blame belongs to the American Diabetes Association and the American Association of Clinical Endocrinologists. More of the blame belongs to the certified diabetes educators that do not educate, but use mandates and mantras.

Most of the blame has to fall on our medical insurance industry that listens to the Centers for Medicare and Medicaid Services (CMS), especially now that the insurance industry has learned how to sidestep the no prior exclusion part of the Affordable Care Act, by almost monthly changing the formulary from which they will reimburse for diabetes and other medications. Some insurance companies are doing exactly this and as a result, many people with diabetes are having a difficult time staying on one medication that is doing well for them. Some of the better companies are consistent in their formulary which is a good thing.

Diabetes care cannot prevent complications in every patient, but surely, doctors could prevent much of the tissue damage that happens in their patients' lives. Unlike in England, here the electronic medical records (EMRs) are very proprietary so that data on diabetes is impossible to obtain. Presently there is not a government agency that can collect data on a national basis to track diabetes and what works and what does not work. These same government agencies rely on information provided on a voluntary basis, which leaves gaping holes in the successes and adverse events that happen with diabetes medications.

The information collection and sharing needs to improve or more doctors will be leaving the practice of medicine. Yet, with the government not staying ahead of the progress, it could be another decade or more before EMRs become usable for the benefit of all – government, health care providers, and patients. Maybe then, the insurance industry will be forced into compliance.

The United States medical system relies on voluntary reporting for much of the data that the different government agencies rely on and report to the public. They cannot give accurate numbers of people at different ages with any type of diabetes. They presently use algorithms for most reporting which gives a very good estimate, but not an accurate number.

When people with diabetes are in the hospital, care has been improving, but still too many errors happen. The first is some nurses that don't understand the ratio for insulin to grams of carbohydrates for each individual. Then many doctors over use basal insulin and cause hypoglycemia. The other big problem is that the food plan for people with diabetes that is promoted by dietitians. It is overloaded with carbohydrates at a time our body needs fat and protein to aid healing, but the dietitians will not allow this.

I can understand that young doctors are less likely to choose Diabetes and Endocrinology as a career. It is a well-known fact that medical, nursing, and other healthcare students have little training in diabetes. There are not enough certified diabetes educators to serve the current diabetes population and with the projected increase, there is little effort to train more. One CDE organization says they are working on this, but when everything is tied up in committee, who is to know what intentions have priority. The other CDE organization is trying to put a strangle hold on who can practice as a CDE. Both organizations work with so few people with type 2 diabetes that I must wonder when they will force their members to stay away from mandates and mantras and start teaching diabetes education.

Until the Federal and State governments start requiring insurance to cover telemedicine, little growth in treating rural diabetes patients will happen. When I think of the diabetes education that could be taught by a form of telemedicine, it stinks that most healthcare providers will not use this. Then we have other medical professions working to stop telemedicine through state medical boards. This is protectionism rather than education at its worst.

What Is Wrong with Our Diabetes Economy?

The money being paid to certain so-called experts is our problem. In 1997, the American Diabetes Association convened a group of these “experts” and they changed the definition of type 2 diabetes from what it was by lowering the level to 126 mg/dl. Up to 1.9 million more Americans now had diabetes.

In 2003, 25 million Americans were added to the roll when another group of experts defined pre-diabetes as being from 100 to 125 mg/dl. Now I don't think either of these was that bad, but what followed does raise my hackles. This caused the diabetes pharmacological industry to have a decade of booming business. Never mind that the U.S. Food and Drug Administration has not approved any drugs for the treatment of pre-diabetes. In addition, the medical insurance industry has not been willing to pay for any drugs used “off-label” for the treatment of pre-diabetes.

In 2013, IMS Health, a drug market research firm, declared that diabetes drug sales reached $23 billion. This exceeds the combined revenue of the National Football League, Major League Baseball, and the National Basketball Association.

The money trail gets even dirtier. The “experts” were rewarded for their changes in definitions, in that 13 of 19 members of a committee received more than $2 million in speaking and consulting fees since 2009 from big pharmaceutical companies. Prior to that the committee members making the changes in definition each received several million dollars a year from the companies making the drugs.

“Many of the new drugs approved by the FDA can cause serious side effects, including heart problems, cancers, and overdoses leading to an estimated 100,000 emergency room visits each year by people with dangerously low blood sugar, according to published research, interviews, and other data reviewed for this story.”

“Separately, a MedPage Today/Milwaukee Journal Sentinel analysis found about 3,300 cases in which diabetes drugs approved since 2004 were the "primary suspect" in a patient's death, according to adverse event reports to the U.S. Food and Drug Administration. In another 20,000 cases, the drugs were believed to be responsible for hospitalizations.”

Clifford Rosen, MD, an endocrinologist and professor of medicine at Tufts University School of Medicine, said that doctors are using drugs that are great for lowering glucose, but do nothing for cardiovascular risk. Dr. Rosen said it is also unproven whether many of the newer drugs are preventing other diabetes complications.

In recent years, the FDA has increasingly relied on "surrogate" measures when approving new drugs. In heart disease, that can mean relying on better numbers on a cholesterol test rather than reductions in actual heart attacks.

“Surrogate endpoints are attractive to both industry and regulators because they provide a faster, less expensive pathway to marketing approval than clinical trials that ask if a drug decreases the number of heart attacks, kidney failure, or death. The reason is simple: clinical trials that rely on those hard endpoints take years longer and require many thousands of patients.”

The study of the drug saxagliptin (Onglyza), approved in 2009, was designed to show saxagliptin was better at reducing heart attacks, strokes, and cardiovascular deaths than a placebo, but it failed to do so. A 2013 paper in the New England Journal of Medicine showed the drug actually increased the rate of hospitalization for heart failure by 27%. The drug remains on the market, though the FDA says it is investigating the matter.

The money trail will not end, and doctors, researchers, and members of the FDA will continue to build their retirement coffers. And no one will stop this!

Read the full article here.

Two Topics for Our January Meeting – Part 2

Next Tim introduced Brenda and Jason for their program on diabetes self-management. Brenda started out by saying you have had a portion of self-care and Jason and I will introduce you to more on self-care. In preparing for this portion, we did not anticipate all the parts involved in diabetes self-management. Therefore, more will be included in future meetings.

Brenda thanked Rose for getting this topic started. She then explained that most of the old members have discussed this in the past and would be available to answer questions after the meeting. Then she turned to me and said that they had developed their own slides and if they missed something, let them know so they could add it for future meetings.

She asked Tim to put up the first slide. It included the following:

• Blood glucose testing
• Proper care of testing supplies
• Maintaining blood glucose logs, food logs, health logs
• Keeping a medications list to include RX number, Medication common name and brand name, dose size, recommended time for taking medication, and when exceptions may be allowed, plus RX expiration date
• Understanding hyperglycemia and hypoglycemia and steps to manage them
• Learning how to interpret blood glucose readings and how they should guide food intake or reducing foods or eliminating some foods. Also using the health logs to adjust medications if recommended.
• Developing your food plan
• Counting Carbohydrates
• Self examination of your body for sores especially your feet
• Establishing an exercise regimen you can adhere to and enjoy
• Changing the lifestyles necessary to help manage diabetes
• Self-management education does work for the elderly (over 60 years of age)
• Lessons in self-monitoring of blood glucose (SMBG)
• Learning how to self-manage diabetes
• Setting realistic goals and even considering getting off all medications
• Being tested for vitamin and mineral deficiencies
• Travel with type 2 diabetes
• Handling sick days
• Problem solving skills

Next Jason handed out examples of logs and an example of a medications list/log. Brenda covered each log briefly and Jason covered the medications list/log. Brenda had borrowed my book that covered hyperglycemia and hypoglycemia and had several slides showing what the symptoms could be and how to treat each. She and Sue had developed a list for those on oral medications and a list for those on insulin.

Brenda said that Jason had some questions they should answer.

Jason said yes, and asked for a show of hands among the new members that were having some foot pain, like something of a thousand pins sticking them or a burning feeling. Including Julie and Earl, six others raised their hands. Jason said this indicates something important. This means that you need to be tested for vitamin B12 and vitamin D deficiency. The neuropathy pain that you are experiencing is often related to these deficiencies. This caused another of the new members using the VA to speak up and he asked if that was why his VA doctor had prescribed vitamin B12. Julie answered yes and said this is what happened at her appointment. Julie added that her deficiency was severe enough to require shots and a supplement. Brenda had Tim put up the next slide. She said we learned about this the hard way when Allen required shots for Vitamin B12 and Vitamin D3. Several were surprised that we were recommending vitamin D3. Tim put the last slide up from my blog and the discussion really started. The slide included the foods rich in vitamin B12 and the statement that many people with diabetes do lose the ability properly to utilize this form of vitamin B12.

The questions and discussion lasted for another hour and the older members were very active answering questions of the new members. As we ended the meeting, Tim received a call that the member, Albert had passed. Tim called on Allen to explain the circumstances surrounding his hospitalization and death. Allen said that he was not storing his meter and test strips properly and most had become damaged in the way he stored them and he had gone into hyperglycemia and then into a coma. He said that he had visited with Albert several times and attempted to have him store his testing equipment more carefully, but with no success. He had an episode of hypoglycemia on fourth of this month putting him in the hospital. Even that had not got his attention. On Friday he had been admitted to the hospital a second time and this time in a coma because he had not kept a watch on what he was eating and had stopped testing.

Tim could see Allen start to waiver and finished by saying that the long-term members were concerned about our newer members. Tim concluded that before anyone else has this happen, please speak up, as we were there to help, and would do whatever we can do individually or as a group to help them avoid what happened to Albert. Tim asked if everyone had emails for all the members and he would send this with phone numbers to anyone wishing another copy. The meeting was over, but everyone stayed for about a half-hour, asking questions and this surprised and pleased those of us that had been in the group for a longer time.

Two Topics for Our January Meeting – Part 1

Our January meeting was different from many of our meetings. Two members were unable to attend because of other commitments. Another member that was absent we could understand, as he was in the hospital and we could understand why, as he was in a diabetic coma because of extreme high blood glucose. His prognosis was questionable and the doctors were not optimistic about his recovery. Another member was at the hospital to alert us if anything happened.

Tim called the meeting to order and introduced Barry and A.J for the program on testing and storing the testing supplies correctly. Barry said he was feeling good about having slides for the meters and test strips used by all but one of the members. We discussed the different temperature ranges that the different meters could be stored or used in and many were surprised that the ranges varied as they did. The meters used by those in the VA system had the greatest range by a few degrees and the two meters sold by Walmart had the next temperature range. The ones supplied by the Medicare had the narrowest temperature range. The fourth meter was just above the Medicare specifications. When asked, Barry stated that the last meter statistics would be available later this month.

Then A.J started the slides for the test strips and this generated a lot of questions about storage of the test strips and use in temperatures outside the recommended temperatures. Among the new members, many were shocked and surprised at the directions given. Only one of them said she was using them within the recommended ranges as she had read the directions. A.J covered the errors from my blog here and this caused more questions. A.J said too many people waste test strips and had Tim put up the slide he had developed from my blog here. He stated that if the A1c reading was significantly higher than what the daily readings were, then people were possibly having errors in their test strips.

Barry called for a show of hands on how many on insulin were having episodes of hypoglycemia because they believed their test strips. Five hands were raised and A.J said this could could happen because they did not store their test strips properly. Then A.J emphasized the order for proper testing. Always have all the equipment available and ready to use. Barry emphasized that the case that came with their meter was probably the best for this purpose. A.J said that you should also have your testing log available at the same time.

First, have the lancing device (with new lancet inserted if needed) ready for use. Next, remove a test strip from the container, close the cap on the test strip container, insert the test strip in the slot on the meter, and once the meter reflects the code, pick up the lancing device and prick the side of a finger. Make sure there is enough blood and pick up the meter, slide the test strip slightly into the blood, and let the blood wick into the test strip. In most cases you will have a reading within five seconds. Then he said make sure that you do this out of direct sunlight and you should take less than 30 seconds from taking the test strip out of the container to wicking the blood into the test strip. A.J had me do this with Barry holding a stopwatch and it took me 27 seconds from start to finish.

This generated more questions about having enough blood. A.J said this is why you need to adjust your lancing device to receive enough blood and not forcing more blood out if it can be avoided. A.J stated that forcing blood could cause interstitial fluid out with the blood, which would cause an incorrect reading. Milking the finger is acceptable for slightly more blood. I added that I had used an alcohol pad since no water was available and I had not been handling fruit or food. I asked if anyone had noticed how I held my hand downward until I was ready to push the test strip into the blood. A few nodded their heads and Barry said this is one way to ensure enough blood.

Barry concluded that there are several things that can affect your blood glucose levels. Anemia, gout, a recent blood transfusion, and dialysis can all lead to false readings and affect these and your A1c levels. Also if you are at a high altitude, your blood glucose readings will be affected, as they will when it is very humid or hot.

A.J said we don't want to forget that handling some foods and especially fruit without washing your hands thoroughly with soap and water can create high blood glucose readings that are false. This can be the cause of episodes of hypoglycemia.

Continued in tomorrow's blog.